Areas for quality improvements in heart failure care: quality of care from the family members' perspective

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The high symptom burden and the complex needs of people with chronic heart failure (HF) place great demands on their family members, and in previous research, family caregivers describe how they provide personal and emotional care 1 and experience caregiver burden 2, impaired quality of life 3 and decreased emotional well‐being 11. People living with HF have a serious condition with a high symptom burden and a poor prognosis 12. The course of the condition is unpredictable, and when symptoms worsen, they often lead to impaired quality of life 13. The treatment of HF involves complex medications and demanding self‐care activities 13, and care of people with HF often takes place at home 15. A systematic narrative review about informal caregivers' needs in advanced HF reported that informal caregivers need psychosocial support and support to navigate the healthcare system, and this includes information about symptoms, treatment and prognosis of the disease 16.
Close relatives who live with a partner with HF have described their situation as being constantly worried, standing by and being ready to step in, and they have reported that they are burdened by responsibility, physically burdened and isolated at home. They also describe relief in the possibility to sharing their responsibilities with the palliative advanced home care team 17. Interviews with patients with advanced HF and their caregivers revealed several problems in managing life for patients with HF, such as problems with everyday tasks and access to services. The patients often have to rely on their family caregivers for help and support 18. It has further been shown that the emotional well‐being of caregivers is associated with the emotional well‐being of patients with HF 19. It can therefore be hypothesised that the quality of care provided to the patients influences quality of life for both the patients and their family members, and this is why it is important to ask family members about their perspectives on the quality of HF care. Another reason for investigating their perspectives is that family members' experiences of care quality might be used as proxy measures for the patients' view, which has previously been used in palliative care 20. When patients with severe HF reach end of life, family members' perception of care quality might be important to listen to in order to improve the quality of HF care.
Quality of care can be difficult to measure 21. Global questions about satisfaction can be misleading because they might not be sensitive enough to describe the care in detail, and it might be difficult to identify areas for quality improvements 23. There is also a tendency that people overrate satisfaction 23. Therefore, it is emphasised in the literature to focus on measuring peoples' experiences rather than satisfaction, that is what happened rather than the evaluation of it 22. It is also important that instruments used to measure care quality are based on a theoretical foundation so that it really measures quality from the perspective that is aimed 24, for example patients or family members.
Despite these important reasons for asking for family members' perspectives, few studies have to our knowledge measured family members' perspectives on the quality of HF care. There is also lack of research into how family members perceive the quality of HF care in an outpatient setting. Therefore, we aimed to describe family members' perceptions of quality of HF care in an outpatient setting.

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